The Regulation and Quality Improvement Authority. Review of Eating Disorder Services in Northern Ireland

Transcription

1 The Regulation and Quality Improvement Authority Review of Eating Disorder Services in Northern Ireland December 2015 Assurance, Challenge and Improvement in Health and Social Care 1

2 The Regulation and Quality Improvement Authority The Regulation and Quality Improvement Authority (RQIA) is the independent body responsible for monitoring and inspecting the quality, safety and availability of health and social care (HSC) services in Northern Ireland. RQIA's reviews aim to identify best practice, to highlight gaps or shortfalls in services requiring improvement and to protect the public interest. Our reviews are carried out by teams of independent assessors, who are either experienced practitioners or experts by experience. Our reports are submitted to the Minister for Health, Social Services and Public Safety, and are available on the RQIA's website at Acknowledgements We are grateful for the cooperation from individuals and agencies, both voluntary and statutory, who met with us to discuss issues, highlight areas of good practice and suggest areas for improvement. We also thank those who attended our focus groups and our summit event, many of whom shared their personal experiences of eating disorder services. 2

3 Contents Contents... 3 Membership of the Review Team... 4 Executive Summary Terms of Reference Review Methodology Introduction Prevalence of Eating Disorders Profile of Eating Disorder Services in Northern Ireland Support Services Provided by Voluntary Organisations Findings Extra Contractual Referrals (ECRs) for Treatment for Eating Disorders RQIA Summit Event Conclusions Summary of Recommendations Glossary Appendix 1 RQIA Eating Disorders Focus Group

4 Membership of the Review Team Dr Bryony Bamford Anne Brooks Laura Lock Pamela Marshall Theresa Nixon Dr Jane Shapleske Specialist Clinical Psychologist/Clinical Director, The London Centre Lay Reviewer, RQIA Associate Director of Occupational Therapy for Specialist Services, Chair of the College of OT Eating Disorders Forum (Special Interest Group), South West London and St. George s Mental Health NHS Trust Psychiatric Nurse and Consultant Psychoanalytical Psychotherapist, Head of Service, Leicestershire Adult Eating Disorder Service Director of Mental Health and Learning Disability and Social Work, RQIA Pathway Lead for Eating Disorders and Consultant Psychiatrist in Eating Disorders, Cambridgeshire and Peterborough NHS Foundation Trust Chair of the Eating Disorders Clinical Reference Group Additional Contributions Stephen Douglas, Programme Manager and Toni O Connor, Advanced Nurse Practitioner in Eating Disorders, St. Patrick s Hospital, Dublin. (Presentation at summit event). Information was obtained from Dr Tarek Zourob, from the Marino Therapy Centre in the Republic of Ireland on the role of the GP in eating disorder services. Review Support Team Dean McAllister Mary McClean Administrative Support Project Manager RQIA RQIA 4

5 Executive Summary This review of eating disorder services in Northern Ireland was commissioned by the Department of Health, Social Services and Public Safety (DHSSPS). Eating disorder conditions include anorexia nervosa, bulimia nervosa, other specified or unspecified feeding or eating disorders; avoidant restrictive food intake disorder; and binge eating disorders. The eating disorder service in Northern Ireland is on a journey of transformation. Professional groups and teams in health and social care (HSC) trusts demonstrated they are building systems and structures that have the potential to provide better quality services for people with eating disorders. The direction of travel is clearly influenced by DHSSPS policy and guidance, which promotes integration, early intervention and a model of stepped care provision. While much has been done in terms of investment, to help establish community teams, both in children and adult services, the increasing referral rate and current capacity of the trusts to respond, requires to be reviewed by the HSC Board. This report is informed by the insights and experiences of service users, parents, carers and voluntary organisations involved in supporting people with eating disorders and the professionals who provide services to them. Some parents and carers stated that advice was not consistently available to help them cope with living with someone with an eating disorder. There is a need for early intervention, and the development of eating disorder pathways for both young people and adults. More treatment options provided by trusts would be helpful, for example, individual therapy, parent counselling and family support groups. Given the increase noted in the numbers of younger people presenting with eating disorders over the past few years, staff working in education services require a range of information about how best to respond to their needs. Good quality information and easy to read booklets for young people explaining eating disorders are available. However, adult patients, carers and service users told us that finding appropriate and easy to read information about eating disorders can be difficult. Most carers stated they had to source relevant material from the internet. The experiences of service users initial contact with general practitioners (GPs) and of their subsequent referral to other essential services were mixed. The review team did not meet with individual GPs, but in discussions with the HSC Board Directorate of Integrated Care, a proposal was made that each trust identify a specialist consultant or staff grade physician, who the GP can contact for advice. 5

6 The review team noted a small number of children aged under 12 required admission to paediatric wards. Established cooperative relationships with paediatric consultants were evident in these cases, and resulted in early intervention and positive risk management. There are no specific designated eating disorder beds at Beechcroft Child and Adolescent Mental Health Service, Belfast. Admissions for treatment of eating disorders to this facility have more than doubled from 12 patients in to 26 patients in The review team recommends that the HSC Board should review the current services available for patients with eating disorders in Beechcroft, and review the effectiveness of the delivery of all inpatient level 4 1 services for both young people and adults with eating disorders. The development of a day care model for young people and adults would appear to be effective, but difficult to develop in each trust without a sufficient number of patients. The HSC Board should discuss with trusts the best use of resources in the development of intensive day treatment services. Complex cases may require additional care and treatment in hospital, and can exceed the ability of trusts to manage the risk. The HSC Board advised that from 1 July 2012 to 30 September 2015, 52 patients were referred to hospitals to Great Britain and the Republic of Ireland (these are known as extra contractual referrals (ECRs)). The review team noted that the HSC Board did not have any outcome measures to evaluate the effectiveness of these arrangements. RQIA recommends that there should be a feasibility study to determine if a specialist eating disorder unit should be developed in Northern Ireland, and welcomes the Health Minister s statement in October 2015 on this matter 2. A potential option could be for such a unit to be established on an All-Ireland basis. Further engagement with patients who have been subject to ECRs is critical in the future development of eating disorder services. Partnership working with voluntary organisations, involving service users and their families was evident in all trusts. A number of families indicated they wished to play a greater part in how services are developed, reviewed and commissioned, with the principles of user engagement embedded in everyday practice. This review makes 11 key recommendations and 15 supporting recommendations for improvement in eating disorder services in Northern Ireland. 1 Level 4 services are specialist/inpatient treatment services for patients who have failed to respond to treatment offered at level

7 1.0 Terms of Reference 1. Profile the eating disorder services in Northern Ireland (to include input from acute medical and psychiatric services, where relevant) in terms of meeting the needs of adults and children/young people, including the organisational structure, staffing levels, skills and capacity available to respond to assessed needs. 2. Establish an understanding of the range of support services provided by organisations contracted by HSC trusts, for young people and adults with eating disorders, and report on the accessibility, flexibility and responsiveness of these services. 3. Assess the effectiveness of the communication and information sharing with service users and carers and how this informs the commissioning arrangements by the HSC Board and the provision of services by the HSC trusts. 4. Review the efficiency and effectiveness of the performance of the HSC trusts in relation to the delivery of a four level model of service provision for young people under 18 and adults with eating disorders in Northern Ireland. 5. Examine the effectiveness of the arrangements made for patients from Northern Ireland to access specialist services in other jurisdictions. 6. Identify any learning or recommendations for improvement to ensure the efficiency and effectiveness of the future delivery of the eating disorder services in Northern Ireland. 1.1 Exclusions Eating disorder services dealing with obesity were excluded from this review. Circulars, guidance, standards, reviews and reports which were published during the course of this review were not assessed as part of this review and may be highlighted for consideration in the future. 7

8 2.0 Review Methodology RQIA used a range of methods to carry out this review: 1. A literature review on eating disorders, and the standards and guidelines available for these services. 2. Self-assessment questionnaires were sent to service providers, one for adult services and one for child and adolescent eating disorder services, addressing the following areas: i. Information on the mental health care pathway and levels of intervention available to adults, children and young people with an eating disorder in each HSC trust, at levels 1, 2, 3 and 4, in accordance with stepped care model of service provision. ii. The rights, views and choices of those using services. iii. The types of interagency approaches used to assess and review adults, children and young people under 18 with an eating disorder. 3. Focus group discussions were held with a range of service users and carers, from all five trust areas. 4. Meetings with senior managers and clinicians from each HSC trust and the HSC Board, responsible for commissioning and providing eating disorder services in Northern Ireland. 5. Meeting with staff from the HSC Board Directorate of Integrated Care about access and support from GP services. 6. A visit to the regional child and adolescent regional mental health inpatient unit at Beechcroft to review its provision of inpatient eating disorder services. 7. Information was also obtained from a GP working in the Marino Therapy Centre, Dublin regarding the role of the GP in eating disorder services in the Republic of Ireland. RQIA s review team convened a number of focus groups of service users and carers across the trusts, throughout the course of the review. The team also met the Eating Disorders Association (EDA), the HSC Board, Public Health Agency (PHA) and HSC trusts. A stakeholder summit event was held in October 2014 involving DHSSPS, PHA, HSC Board and trusts. A range of eating disorder support groups involving service users and carers also attended this event. A service programme manager and senior nurse involved in managing eating disorder services from St Patrick's Mental Health Eating Disorders Service, Dublin, also made a presentation regarding the specialist services provided in the Republic of Ireland. 8

9 3.0 Introduction Eating disorders 3 comprise a range of syndromes encompassing physical, psychological and social features. The physical complications of these disorders may cause great difficulties for individuals experiencing them, family members and health service staff. Anorexia nervosa and bulimia nervosa can both be longstanding conditions, with substantial long-term physical and social effects. Long-term disabilities exert negative effects on employment, relationships and parenting. The impact of a person s eating disorder on home and family life is often considerable and family members may carry a heavy burden over a long period of time. Family members are often at a loss to know how to help or offer support to an affected relative. While anyone can develop an eating disorder, regardless of age, sex or cultural or racial background, the most commonly affected group are young women between the ages of 15 and 25. An eating disorder may also appear in middle age. One of the most common symptoms of eating disorders in both women and men is an exaggerated concern about fitness as a weight reducing behaviour, body weight/shape or health concerns, leading to weight loss in some cases and weight gain in others. The three main categories of eating disorders are anorexia nervosa, bulimia nervosa and binge eating disorder. There are many factors that may contribute to the likelihood of an eating disorder occurring. These include a family history of an eating or anxiety disorder; perfectionist personality characteristics; social and cultural aspects such as exposure to western body ideals; family attitudes; and a genetic predisposition. A focus on controlling weight and shape through restriction of food, over-exercise or binge eating, in certain cases, is used to manage worries or stress. Bereavement, bullying, abuse, family problems, long term illness, or concerns over sexual identity may also trigger an eating disorder. Anorexia Nervosa Anorexia nervosa is defined as loss of appetite for nervous reasons. It often starts with a person attempting to control their body weight and shape through a restriction of food intake (dieting). The disorder itself takes control and distorts thinking, which can lead to impaired decision making about adequate food intake and overestimation of body weight and size. 3 (Eating Disorders in the UK: Service Distribution, Service Development and Training: Report from the Royal College of Psychiatrists, Section on Eating Disorders, 2012) 9

10 Anorexia nervosa is diagnosed when a person refuses or is unable to maintain his or her body weight over a minimal normal weight for age and height, such as 15% below that expected. Sufferers have a body mass index (BMI) of less than 17.5 in adults, an intense fear of gaining weight, a disturbed body image, and, in women, primary or secondary amenorrhea. The diagnostic criteria for anorexia nervosa include 4 : Restriction of energy intake relative to body requirement, leading to a significantly low body weight in the context of age, sex, developmental trajectory, and physical health. Intense fear of gaining weight or of becoming fat or persistent behavior that interferes with weight gain, even though at a significantly low weight. Disturbance in the way in which one's body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or persistent lack of recognition of the seriousness of the current low body weight. Research indicates that 46% of patients with anorexia nervosa can be expected to recover; 33% make a partial recovery; and 20% remain chronically ill 5. Bulimia Nervosa Bulimia nervosa is around five times as common as anorexia nervosa, and is defined as 6 : Recurrent episodes of binge eating. Eating, in a discrete period of time, an amount of food that is larger than most people would eat during a similar period of time and under similar circumstances. A sense of lack of control over eating during the episode. Recurrent inappropriate compensatory behaviour in order to prevent weight gain, such as self-induced vomiting; misuse of laxatives, diuretics, or other medications; fasting; excessive exercise at least once a week for three months. Self-evaluation is unduly influenced by body shape and weight. Bulimia nervosa is more likely to develop in late teens to early 20s. This can occur in a belief that bulimia will help one to diet successfully, where other attempts to lose weight have failed. It is also often associated with low selfesteem, or a lack of self-confidence. A patient may have previously had anorexia nervosa. 4 Diagnostic criteria for Anorexia Nervosa from the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V) 5 Source 6 DSM V criteria for Bulimia Nervosa 10

11 Bulimia nervosa is more difficult for others to notice, as patients have normal body weight, or their weight may fluctuate. For this reason the condition may remain undetected for many years. In common with anorexia nervosa, people who develop bulimia nervosa become reliant on the control of food and eating as a way of coping with emotional difficulties in their lives. They are often highly preoccupied by their weight or shape. Bulimia nervosa tends to run a relapsing and remitting course, with about twothirds of those with the condition recovering within five years. Treatment is most effective when provided early, to help minimise the long-term physical and psycho-social disabilities associated with this condition. Binge Eating Disorder Binge eating is an eating disorder where a person feels compelled to overeat on a regular basis. People who binge-eat do not purge themselves to control weight, but may try to limit weight gain by having periods of eating very little food between binges. Psychiatric and Physical Complications of Eating Disorders Eating disorders are associated with high levels of psychiatric and physical complications, which are often irreversible, lead to multiple medical investigations and have significant resource implications in their management. Psychiatric and medical complications may arise: Psychiatric Over half of patients with anorexia nervosa or bulimia nervosa have an episode of depression at some time during their lives. Rates of personality disorder are considered to be higher in anorexia nervosa than in the general population. Almost two-thirds of those with anorexia nervosa suffer from anxiety disorders during their lifetime, with obsessive compulsive disorder and social phobia being the most common. In bulimia nervosa there is a higher rate of alcohol and drug misuse. Medical Malnutrition can lead to vitamin deficiencies, reduced bone marrow function, leading to reduced immune function and infections and changes in the electrolyte levels in the blood. This can lead to increased risk of cardiac arrhythmia and seizures, loss of muscle tissue (including heart muscle), and changes in liver function. Due to osteoporosis and osteopenia, 30-40% of patients with anorexia are three times more likely than the general population to suffer a bone fracture. 11

12 Female patients with anorexia have markedly reduced fertility rates and seven times the average perinatal mortality rate for children 7. With appropriate treatment and recovery from the eating disorder, the majority of the physical effects are reversible. However, some, such as loss of tooth enamel, osteoporosis and problems with fertility, can be irreversible, if not addressed early enough. If a patient loses a significant amount of weight, it can affect their ability to think clearly and this can make any rational decisions about their own treatment or circumstances difficult. In such situations an admission for assessment, under the Mental Health (Northern Ireland) Order 1986, may be required prior to beginning treatment. 7 Eating Disorder Services/ DHSSPS Consultation Paper May

13 4.0 Prevalence of Eating Disorders Incidence and prevalence rates for anorexia nervosa and bulimia nervosa vary among published studies 8. However, it is estimated that eating disorders affect around 1% of the population. Incidence is times higher among females than males. Around 1 in 250 women and 1 in 2,000 men will experience anorexia nervosa at some time in their lives. On average, the length of illness in anorexia nervosa is seven years, and bulimia nervosa can take several years of treatment. The peak age of onset is years. Overall, around 1-2% of adolescents/young adults develop some form of eating disorder. Female teenagers have the highest rates of new cases of anorexia nervosa each year, at 51 per 100,000. Most cases develop between years, however, an increasing number are now being reported among those under 10 years of age 9. About 10% of people diagnosed as having an eating disorder are men. However, these conditions often go undetected in male sufferers. Many men find it hard to ask for help, particularly when the doctor or counsellor does not recognise their symptoms. There are also a high proportion of treatment resistant cases within this client group, which can result in a high cost of treatment. There has also been an increase in the number of new cases of eating disorders that do not meet the criteria for a diagnosis of either anorexia nervosa or bulimia nervosa. These are classified as eating disorders not otherwise specified (EDNOS) and binge eating disorder. Prevalence of Eating Disorders in Northern Ireland Each year in Northern Ireland, some people develop anorexia nervosa and around 170 people develop bulimia nervosa. There are around 100 admissions to acute hospitals for eating disorders annually. This excludes patients requiring inpatient treatment outside Northern Ireland. Between July 2012 and September 2015, the HSC Board advised that 52 referrals were made for ECRs to other hospitals or clinics in Great Britain or the Republic of Ireland. Two of these were young people under the age of The incidence of eating disorders in the UK in : findings from the General Practice Research Database Nadia Micali1, Katrina W Hagberg2, Irene Petersen3, Janet L Treasure4 9 Eating Disorders, core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders, published by capital British, capital psychological society and Gaskell

14 Admissions of Young People Under 18 to Acute Medical Wards The behaviours associated with eating disorders can cause serious medical problems. The number of admissions of children and young people for medical treatment to acute hospital wards between 2013 and 2015, with an underlying eating disorder is outlined in Table 1. Table 1: Acute Medical Admissions of Young People Under 18 by Trust from 1 April March 2015 HSC Trust Hospital Number of Admissions Belfast Belfast City 11 Mater Hospital Royal Victoria Northern Antrim Area 19 Causeway Hospital South Eastern Ulster Hospital 14 Southern Craigavon Area 9 Western Altnagelvin 14 Total 67 Between 1 April 2013 to 31 March 2015, 67 young people were admitted to medical wards with symptoms of an eating disorder. Number of Admissions to Acute Medical Inpatient Wards for Adults with Eating Disorder Related Health Issues Table 2: Number of Admissions to Acute Medical Inpatient Wards for Adults with Eating Disorder Related Health Issues (July September 2015) Trust July July July July Total June 2013 June 2014 June 2015 Sept 2015 Belfast Northern South Eastern Southern Western Total Health and Social Care Board Nov A reduction in the number of admissions for eating disorder beds to medical inpatient wards was noted in the period July 2013-June

15 5.0 Profile of Eating Disorder Services in Northern Ireland 5.1 Treatment Guidelines for Eating Disorders The treatment of eating disorders in Northern Ireland is based on the National Institute for Health and Care Excellence guideline CG9 10, published in DHSSPS recognises this as a key source of evidence-based, cost-effective guidance on which to operate services. In addition to the treatment guideline, NICE also publishes information for patients and their carers. The professional support offered to patients depends upon their disorder, the availability of services in their area or the arrangements that the HSC Board has made to purchase ECRs, outside Northern Ireland. The NICE guideline emphasises that most people with anorexia nervosa should be managed on an outpatient basis, with psychological treatment provided by a service that is competent in giving treatment and assessing the physical risks of people with eating disorders. 5.2 Types of Treatment Patients may be offered a range of different forms of therapy. If patients are at a very low weight, it may be appropriate for them to restore body weight before engaging in psychological therapy. The therapy offered should be based on discussions between the patient and the healthcare professionals. They will be offered a talking therapy such as: counselling; cognitive behaviour therapy; psychotherapy; cognitive analytic therapy; group therapy; or family therapy. Within more intensive forms of treatment such as inpatient or day patient units, group therapies and experiential therapies should be offered alongside individual talking therapy. The goals of the treatment are: To correct any medical problems which may occur as a result of an eating disorder To help the person reach a healthy weight and to develop healthy eating patterns To help the person to talk about their feelings and learn healthier ways of coping with problems

16 5.3 Children Under 18 with Eating Disorders NICE guidance and clinical practice recommendations suggest that young people with eating disorders should be assessed and receive treatment at the earliest opportunity. The review team met with a range of staff that provide services across the stepped care assessment and treatment model of service provision in each HSC trust. In 2012, DHSSPS developed a five step model, which outlines the relationship between care steps and service provision. Figure 1: Five Stepped Care - Matched Care Services CAMHS A Service Model. July DHSSPS 16

17 Across all HSC trusts, children under 18 have access to an eating disorders service under the umbrella of the child and adolescent mental health service (CAMHS), which includes primary mental health workers and community-based specialist CAMHS teams. Crisis assessment and intensive treatment teams are also available. In 2014, Northern Ireland s total investment in CAMHS was 19.3 million 12. This represents 8% of total mental health expenditure, compared to a national average of 10%. Table 3: Staff Employed within CAMHS Eating Disorder Services CAMHS Consultant Psychiatrist Staff Grade Psychiatrist Staff Eastern Region 1 Whole time Equivalent (WTE) Funded Posts Northern Trust Whole time Equivalent (WTE) Funded Posts Southern Trust Whole Time Equivalent (WTE) Funded Posts Western Trust Whole Time Equivalent (WTE) Funded Posts Dietician Social Worker 1.0 Team Leader Clinical Nurse Specialist Band 6 Nurse Practitioners Family Therapist Eating Disorder Therapist Total RQIA s review team noted that due to differences in investment by trusts, the teams are at different stages of development. 12 The Rees Review of Child and Adolescent Mental Health (NI). September

18 Where necessary, eating disorder teams, refer children and young people who may require hospital admission for intensive care, support and treatment to Beechcroft. This is a specialist facility, which offers a range of services and is located in Belfast. Greater Belfast (including South Eastern Trust) The Eating Disorder Youth Service (EDYS) for under 18s in the South Eastern Trust, offers a comprehensive assessment, treatment and preventative mental health service to children and young people aged up to 18 years of age. Staff also provide support to parents and carers. The South Eastern Trust accepts patients with mild eating disorders (Step 2). Only those with severe eating disorders (Step 3) can be referred to the specialist eating disorder teams. Referrals are generally received from GPs, but can also be made by the CAMHS team, in line with the stepped care model. The community team indicated that it was moving towards early intervention and prevention involving GPs, schools, nursing staff, school counsellors and practice nurses delivering services at a primary care level. The trust indicated that young people referred to the service and their families are offered a comprehensive eating disorder assessment, including the use of standardised self-rating questionnaires; a CAMHS network assessment; a specialist eating disorder clinician rated questionnaire; and a dietetic assessment. This information helps to provide feedback to the young person, and their family. This includes the shared development of a care plan and recommended interventions, including intensive support at home, involving the crisis assessment and intervention team. On referral to the team, while the waiting time for an appointment varies, at the time of the review did not exceed nine weeks. Cases are prioritised in line with the Integrated Elective Access Protocol (IEAP) 13 and clinical need. At this initial meeting staff assess the child/young person to consider the best course of treatment/intervention/support service to meet their needs. The trust endeavours to provide a service in partnership with the child or young person, and parents or carers. The treatment plan used by trusts to treat patients with anorexia nervosa is a recovery based model, which may involve: feeding; weight restoration; physical monitoring; family-based interventions, including psycho-education and parental management; and, individual interventions. 13 An Integrated Elective Access Protocol DHSSPS

19 It may also include cognitive behavioural therapy and motivational enhancement, multi-family group therapy and, on occasion, prescribed medication. The treatment offered by both Belfast and South Eastern trust staff for bulimia nervosa is based on family-based interventions and individual cognitive behavioural therapy. Belfast Health and Social Care Trust The Belfast Trust reported that it has developed robust cooperative relationships with paediatric consultants. The team offered inreach support to young people in acute hospital settings. Support and training to help increase awareness and understanding of eating disorders and how teams can help is offered to school staff, youth workers, GPs and others who work alongside children and young people. Northern Health and Social Care Trust The Northern Trust CAMHS eating disorder service is located at Alder House at Antrim Area Hospital. Referrals are accepted from many sources, such as GPs, paediatricians, dieticians and school nurses. It provides a comprehensive assessment and diagnosis service to establish the severity of a patient s eating disorder problem. The eating disorder team consults with both primary care and specialist CAMHS in relation to patients presenting with anorexia nervosa or bulimia nervosa. The CAMHS team provides a range of therapeutic treatments, including: family-based treatments; multi-family therapy; motivational interviewing; and interpersonal adolescent focused therapy. The team also provides psychoanalytical work, supervised intensively by an accredited child and adolescent psychoanalytical psychotherapist, and cognitive behavioural psychotherapy, as required. Clients presenting with mild eating disorder symptoms, with no physical risk, are managed within the primary mental health team. Young people presenting with moderate eating disorder symptoms, where there are no specific risks, are treated within specialist CAMHS. Those with moderate to severe eating disorder presentations are treated within the specialist eating disorder team. The eating disorder team primarily offers an outpatient service, with a paediatric inpatient service, where severely malnourished patients require naso-gastric tube feeding. The Northern Trust has two beds at Antrim Area Hospital dedicated to acute admissions of children under 16 with an eating disorder. This has demonstrated beneficial outcomes for younger people due to earlier intervention. This has also helped reduce admissions of young people to Beechcroft. 19

20 Following an assessment, a treatment plan is discussed and agreed with the young person and their family. Young people receive intensive daily support and psychological intervention from the eating disorder team. Psychiatric support is provided by the specialist CAHMS team as required. The senior psychology staff consult with the team/leader and clinical services manager for advice and management in relation to treating service users who meet the diagnostic criteria for an eating disorder. The clinical services team leader carries a full caseload, involving supervision referrals, management and clinical time. Clinical nurse specialists are accredited in cognitive behavioural psychotherapy. Southern Health and Social Care Trust In 2013 the trust opened an eating disorder service for young people under 18 at the Longstone Centre, Armagh. This newly refurbished centre offers an open, bright, comfortable space with excellent facilities and a full range of treatment options available. The Southern Trust assesses and treats young people who present with anorexia nervosa, bulimia nervosa and other eating disorders. Referrals are accepted from GPs, paediatricians (hospital and community), medical physicians, emergency department consultants and from the generic CAMHS team. The eating disorder team offers a range of therapeutic interventions including: individual work; motivational work; group work; family therapy; multi-family therapy; and dietetic input/education/group work. The team works in close collaboration with GPs, and staff in both paediatrics and acute wards, to share information and provide advice on the management of eating disorders. This involves face-to-face contact with ward staff and meetings between Craigavon Area Hospital and CAMHS. Western Health and Social Care Trust The Western Trust CAMHS team provides eating disorder services at three sites, Londonderry, Omagh and Enniskillen. This ensures local access to CAMHS services and promotes multidisciplinary and interagency collaborative working at a local level. The approach of the Western Trust eating disorder team is based on the individual assessed need of the young person and family. Therapeutic inputs include multifamily cognitive behaviour therapy - enhanced (CBT-E) and systematic family therapy, motivational interviews, body image work and group work. 20

21 At the time of the review, the Western Trust CAMHS team, did not have a psychologist, consultant psychiatrist, occupational therapist or a family therapist. Clinical supervision of cases is provided within a multidisciplinary context as an integral part of the intensive therapy-eating disorder (IT-ED) service framework. CAMHS staff have access, on a contractual basis, to consultation from Great Ormond Street Hospital, London, funded by the HSC Board. Inpatient treatment may be required to assess clinical risk involving medical stabilisation in Altnagelvin Hospital or the South West Acute Hospital. In such cases, there is liaison between the CAMHS team and the acute paediatric ward. 5.4 Beechcroft The review team visited Beechcroft, managed by the Belfast Trust, a 31 bedded facility for children and young people with mental ill health. Its function is to provide a safe and containing therapeutic environment where intensive assessment can be provided and the child can be stabilised. Eating disorder specialists from Beechcroft provide advice to medical staff in acute hospital wards as required. Similarly, medical specialists support and advise CAMHS staff on medical issues during an inpatient admission to Beechcroft. The staff profile for Beechcroft includes a cognitive behavior nursing therapist, social workers, occupational therapists, clinical psychologists and consultant psychiatrists employed on a full and part-time basis. There are no dedicated eating disorder beds in Beechcroft for patients who require additional treatment modalities/family therapy. Children under 12 can be admitted to Beechcroft when their level of risk indicates that admission is the only option. To help improve services provided across Northern Ireland, at the time of the review the HSC Board had commissioned a separate review of Acute CAMHS 14. Admissions to Beechcroft The review team noted that admission rates more than doubled from 12 in to 26 in Between 1 April 2011 and 31 March 2015 a total of 83 young people were admitted for treatment of eating disorders to Beechroft. The majority of admissions are in the 15 to 16 year old age group. 14 The Rees Review of Child and Adolescent Mental Health (NI). September

22 Table 4: Admissions of Young People under 18 years to Beechcroft from by Trust HSC Trust Number of Admissions Belfast 27 Northern 7 South Eastern 18 Southern 6 Western 25 Total 83 The Belfast, South Eastern and Western trusts have more admissions to Beechcroft, whilst the Southern and Northern trusts manage most patients within their CAMHS eating disorder services. The lack of a psychologist, psychiatrist or family therapist in the Western Trust CAMHS eating disorder service may be a contributory factor to their higher admission rate to Beechcroft. The review team noted an increasing number of young people under 12 being cared for in acute wards who do not fit the eligibility criteria for admission to Beechcroft. The review team noted there was no system in place for the HSC Board to monitor the number of children admitted to acute wards. KEY RECOMMENDATION 1 The HSC Board should review the assessed need for services against the capacity and current level of funding in HSC trusts to ensure that trusts can offer early intervention and further develop their community based teams. 5.5 Adult Services There are four adult eating disorder teams in Northern Ireland. The Belfast Trust provides the eating disorder service on behalf of the South Eastern Trust. Adult specialist eating disorder teams plan and deliver treatment in line with a model involving four levels of stepped care, as recommended by the Bamford Review 15, NICE guidelines 16 and the psychological services model for mental health services endorsed by the DHSSPS The Review of Mental Health and Learning Disability (Northern Ireland). A strategic Framework for Adult Mental Health Services. DHSSPS. June P38 & P Recs: mental health report.pdfe which seeks to addres 16 NICE. Eating Disorders. National Clinical Practice Guideline Number CG A Strategy for the development of psychological therapy services. June DHSSPS. 22

23 Trust staff stated they follow Clinical Guideline 9, Core Interventions in the Treatment and Management of Anorexia Nervosa, Bulimia Nervosa and Related Eating Disorders, (NICE 2004), and other mental health service standards relevant to Northern Ireland. Trusts use a stepped care approach to match patients needs with the right treatments and interventions, and to assess the correct level of support required. Decisions about the right treatment setting in which to manage a person with an eating disorder currently depend on: the nature of the disorder; the level of risk; physical and psychological complications; and, patient preference. Every step reflects a recovery model, and the recovery principles contained in the model inform the delivery of eating disorder services in Northern Ireland. This includes supporting patients to recover aspects of their lives prior to the onset of their disorder and to improve quality of life. The aim of this stepped care model is to provide treatment in the community and prevent hospital admissions. The review team noted developed links and co-working arrangements with relevant services, to address physical health needs of service users. It is of particular importance that prevention, early detection and prompt treatment and support are available to pre-empt longterm complications. The contribution, made by appropriately informed family members and carers, was raised by families, and this should be considered by practitioners. Adult trust teams include consultant psychiatrists who specialise in eating disorders; specialist nurse therapists; dieticians; and clinical service managers/team leaders. However, no evidence was provided to the review team of social workers being employed as part of adult eating disorders teams. The majority of adult patients are treated within their local community mental health teams, where professionals have a range of training and skills to respond to assessed need. More intensive and complex interventions may require access to specialist services, which varies within and between trusts. Care pathways for eating disorders are in the process of development by the HSC Board, to ensure a coherent strategic approach across the regional teams in delivering the stepped care model of intervention. KEY RECOMMENDATION 2 The HSC Board should progress, as a priority, the development of care pathways for eating disorders for CAMHS and adult services. 23

24 5.6 Use of Integrated Elective Access Protocol A key objective for HSC trusts is to ensure that services to treat and care for people with mental health needs are responsive and accessible to all who need them. Integrated Elective Access Protocol (IEAP) 18 has been agreed by the HSC Board. This sets out systematic principles and processes for the management of patients/clients from the point of referral to the point of discharge. These principles apply across all mental health care services, but some specialist areas of mental health need to tailor the guidance to reflect the specific needs of their patient/client group. Trusts are required to ensure that patients wait no longer than nine weeks from referral to the commencement of treatment. For psychological therapies patient should wait no longer than 13 weeks. At the time of the review, some young people with eating disorders were on a waiting list for CAMHS. However, all were seen within the required nine week timeline in accordance with the regional integrated elective access protocol. The review team did not note any robust system in place to monitor the experiences of these young people. It is essential that commissioners engage regularly with young people and their families, to better inform commissioning decisions. Any individual who presents at an emergency department and is considered to be high risk of self-harm is usually offered an urgent mental health assessment, either in the emergency department, or on the ward, if they are admitted for medical treatment. An arrangement for a Card Before You Leave 19 referral has been put in place for a next day appointment, which can be used in low risk cases, or where a patient refuses the urgent assessment. Promoting Quality Care (PQC) Guidance (DHSSPS, May 2010) 20 on risk assessment and management in mental health services has been adopted by all trusts. A review of the PQC guidance was undertaken by the HSC Board who was involved in launching the regional Mental Health Care Pathway in Its intention was to have new risk assessment and management procedures in place through developing tools to support the You in Mind 21 implementation. 18 An Integrated Elective Access Protocol DHSSPS HSC Board has carried out an evaluation of the Card Before You Leave scheme in emergency departments 24 April Findings are now available HSC Board Publications. 20 Promoting Quality Care - Good Practice Guidance on the Assessment and Management of Risk in Mental Health and Learning Disability Services. DHSSPS New Regional Mental Care Pathway developed jointly by HSC Board and Public Health Agency, You in Mind October

25 SUPPORT FROM VOLUNTARY SECTOR 5.7 Stepped Care Model of Intervention for Adults Level 1 Level of Intervention Client Group Primary Care (GP Health Visitors, Practices Nurses etc.) Recognition and watchful waiting. Weight monitoring and bloods checked. Mental Health Promotion. Information and low level help, Dietary service Level 2 Level of Intervention Client Group Community Mental Health Team Facilitated self-help and guidance in work and community settings Brief psychological interventions and counselling in primary and community setting Level 3 Level of Intervention Client Group Eating Disorders Service Specialist Outpatient Service Close clinical monitoring both psychological & physical through the shared care with the relevant agency Combined treatments Intensive psychological interventions using motivational and engagement work, CBT-E, IPT, Psychodynamic therapies. Intensive key working with other agencies to ensure service users are involved in all aspects of their treatment to provide a safe enrolment to facilitate recovery. Level 3A Level of Intervention Client Group Intensive support and re feeding in reach service in Re-feeding Treatment of Co-Morbid Psychiatric illness acute medical and Level 3 Community Services Psychiatric wards operating on an in reach service spaces For those with atypical eating patterns, recent onset eating disorder without severe weight loss or physical symptoms or people who require support and monitoring. For those that have failed to respond to level one For those mild to moderate Eating disorders with concurrent other mental health problems For those mild to moderate Eating disorders who do not present physical risk For those not responding to intervention at Level 1 or 2. For those with severe and complex eating disorders For those with rapid weight loss or long term low weight For those presenting with high physical risk or other medical complication For those not responding to intervention at level 3 For those with severe and complex eating disorders For those with rapid weight loss or long term low weight For those presenting with high physical risk or other medical complication Level 4 Level of Intervention Client Group Specialist Inpatient Treatment (Currently ECR to preferred providers in England and Republic of Ireland) Complex psychological treatments within specialist services Developments of care packages with additional input from specialised services For those that have failed to respond to level 3 For those acutely ill in need of robust day programmes 25

26 5.8 Investment in Eating Disorder Services in Northern Ireland Investment was provided during to allow for the development of specialist community eating disorder services across all trusts. Trusts also received additional investment to establish a specialist eating disorder practitioner resource within CAMHS teams. In 2008, accepting that community-based eating disorders were underresourced, DHSSPS provisionally identified 1 million funding, with a plan for second year funding to develop eating disorder services. However, 0.5 million of this funding was not allocated. As a consequence, eating disorder teams were unable to develop the service levels agreed with commissioners, and capacity is currently considerably less than required. Table 5: Staff Employed within Adult Eating Disorder Services Staff Profile by trust (Adults) Whole Time Equivalent (WTE) Funded posts Consultant Eastern Region Eastern Region Adult Eating Disorder Service The Eastern Region Adult Eating Disorder Service (AEDS) provides treatment for people with severe and complex eating disorders within both Belfast and South Eastern trusts. The team, based at Woodstock Lodge offers patients a choice of venues at satellite clinics in the South Eastern Trust. GPs refer patients through the respective HSC trusts agreed points of access for all adult mental health referrals. 26 Northern Southern Western Psychiatrist Consultant Physician 0.1 Staff Grade doctor 0.6 Dietician Eating disorder practitioners 2.0 Clinical services manager Team Leader Band Nursing staff Band 1.0 5/6 Nursing staff Band Clinical Psychologist Specialist Occupational Therapist 0.4 Healthcare Assistant 1.0 Administration Staff Total

27 Woodstock Lodge is the single point of referral for patients living in Belfast; another mental health assessment centre has been identified for patients living in South Eastern Trust area. Services are designed along a stepped model of care. A comprehensive assessment of need and a risk assessment is undertaken, in line with PQC guidance on the Assessment and Management of Risk (DHSSPS, May 2010) and the new regional mental health pathway. Staff assess the presenting needs of patients, triage the referral, and refer the patient to the appropriate service. This can include referral to a psychologist, a psychiatrist, a specialist practitioner in a community mental health team, or the specialist eating disorder team. Hospital doctors can access mental health services through agreed psychiatric liaison arrangements, or the agreed single point of access in the trust, depending on circumstances. Patients can also be seen at home where there is a particular clinical need. The team also provides support, training and supervision to staff delivering care at all other steps in the model. This helps to ensure that people with an eating disorder obtain the appropriate level of services for their condition. Psychological interventions are considered to be crucial in addressing the core attitudes that underline eating disorders, and in influencing the longer term outcomes. Individualised, structured psychological therapies offered include: comprehensive assessment of need a risk assessment in line with PQC cognitive behaviour therapy (CBT) specialist supportive clinical management (SSCM) and physical monitoring of patients conditions in collaboration with their GP. The AEDS team offers individualised and structured psychological therapies including: CBT; CBT-E interpersonal therapy multi-family group work (initiative with CAMHS Eating Disorder Youth Service (EDYS) motivational enhancement work body image work physical and psychiatric review psycho education groups carers support The team also provides intensive nutritional rehabilitation and community support for patients attending day care and an in-reach service during any period of inpatient treatment, ensuring a seamless transfer from hospital to community. 27